Stichting Lepelaar

Vision: it should be possible to help PKAN patients worldwide to reduce or avoid the negative effects of the metabolic disorder PKAN.

Mission: develop, through good research and good understanding of the pathophysiology of PKAN, a product, which should be available and affordable to PKAN patients within a few years and on a long term base.

Stichting Lepelaar is based on the research performed at University Medical Center Groningen (UMCG) and Oregon Health and Science University (OHSU). Stichting Lepelaar is fully dedicated to find and develop a solution for PKAN patients. All objectives and activities of Stichting Lepelaar are fully aligned with the activities of US-based Spoonbill Foundation.

Through focused research a medical product will be developed to reduce the negative effects of impaired conversion of vitamin B5 to Co-enzyme A. By means of close collaboration with international research institutes, sufficient know how will be obtained to develop a scientific supported solution. Through collaboration, specialized companies will produce, formulate and characterize the foreseen medical product. Stichting Lepelaar will strive that this will result in a cost effective, time restrictive development towards registration and use by PKAN patients on a long term sustainable base.

Click here for the policy plan (Dutch) of Stichting Lepelaar.


Stichting Lepelaar’s board consists of:

  • Ody Sibon (chair)
  • Hans Hektor (Secretary Treasurer)
  • Lynn Baker (member)
  • Janet Weiner (member)

Stichting Lepelaar has the objective to serve general purposes and not to gain profits. The board members will not receive any remuneration for their activities, except reimbursement for expenses.

Stichting Lepelaar will use all proceeds in line with the objectives to develop a solution for PKAN. Initially the focus will be on research, production, formulation and quality control, including alignment with regulatory agencies. In the next phase the focus will be on scaling up of the aforementioned processes, promoting the product and distribution of the developed product. In the longer term the proceeds will be used to secure supply and quality and reduce the costs for the patients.

Financial and progress reports will be published on this website after closure of the fiscal year (only in Dutch).



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